Endometriosis affects approximately 176 million women and AFAB individuals worldwide, but it looks different on everyone. Unfabled believes endometriosis warriors deserve to be seen and heard, so we're introducing you to some of the people behind these statistics. We've been speaking to endometriosis warriors and giving their voices a platform, so you can read their stories and learn more about this condition. 

The following article is written by Rebekah Lloyd, international speaker, consultant, podcaster, women's advocate, and founder of This Independent Life, a social impact platform that helps women to achieve personal independence in life through awareness, knowledge and action, regardless of their background. Rebekah's journey to diagnosis took nearly ten years. This is her story. 

The early signs

As something which took 10 years to get officially diagnosed, it’s hard to know where it even began. One of my earliest memories was being at university and my then housemate, now dearest friend to this day, Vicky, coming into my bedroom and asking why I hadn’t come out all day. I was lying in bed, having already taken a questionable mix of painkillers, in pain that meant I could barely stand. 

And it was like that for years. I thought this experience was “normal”. That it was “normal” for women to have painful periods, as that’s the only thing I’d ever heard. Even after plucking up the courage to go to the doctors about it a few times, every time I just left with stronger painkillers. Nobody ever probed into my symptoms, nor made any suggestions of referral to investigate it. It always felt like I was an easy patient to get off the list before moving to the next 10 minute slot.

And who was I to question the professionals?

Despite my feeling that there is a deep-rooted and chronic lack of understanding and empathy from the medical and pharmaceutical industry overall when it comes to listening, understanding and taking action across all women’s health conditions, I say this with love and understanding. In the UK at least, I know what it’s like to work in the NHS. Not only do I have a mother who’s a nurse, and a sister who’s a doctor, I myself used to work there early in my career. I know the struggles, and the pressures people are under, and that there are incredible healthcare professionals out there who listen, care, and want to help. However, I know that doesn’t go for everyone, especially knowing how common dismissal is for those with endometriosis.

Giving the pain a name

"When I was diagnosed in 2021, to say it was a relief would be a lie."

I was terrified when I heard the words, said in such a casual manner by the doctor, “it sounds like it’s probably endometriosis”. My step-mother had endometriosis and was infertile as a result. She was the only person I ever knew who’d had it, and was how I first heard about it years before. She’d had a terrible time with pain and everything that comes with it, and the thought of having to be labelled with this same thing was anything but relief. 

Combine this with the fact that the words “it’s probably” really meant “we have no idea of knowing unless we operate on you”. My doctor came to this conclusion after I had an ultrasound scan, and not the ones you see on TV and in films of people who are pregnant. This ultrasound scan was not on my belly, but inside me and using a giant probe that, for want of a better word, looked like a giant dildo. Instead of a comforting “it’s a bit cold” jelly, cue some “it’s a bit cold” lube and the probe being inserted. The doctor moved and swirled it around, a strange and rather unpleasant sensation, making small talk as she went. Until she stopped talking, and the energy switched. A large black ball had appeared on the small screen attached to the probe. 

She had found an endometrioma growing on my right ovary. It wasn’t confirmation but strong evidence that this had been the cause of my symptoms. These things are also known as “chocolate cysts”, something which I thought was a joke when I first heard it as I couldn’t see why anyone would want to associate something so delicious with something so awful.

After a wave of emotion and some tears, the doctor said we should schedule surgery to remove it and get biopsy lab tests to get confirmation that it was endometriosis. But not before I was told “at least it’s not cancer”, a sentence which I don’t disagree with but still struggle to understand. When I asked what alternative treatments there were, she said that there were none. 

Challenging the perception

 When I was finally diagnosed with endometriosis, I was 30, running the London office of a global creative agency, having just bought my first home. On the face of it I was successful and happy, and why would anyone have questioned that?

Then I had a breakdown.

In reality, I was in denial. I had been slowly falling into a dark pit of despair, my mental and physical health deteriorating, refusing to listen to my gut. Refusing to accept that I needed a change, needed to take a risk, put myself first, and try something new. I realised I needed something to help me figure out what I truly wanted. A fulfilling career that felt authentic and made a positive change in the world. Money that worked for me and allowed me to support the things I cared about, and health, as without that, nothing else matters. But I couldn’t find it. I tried, I searched, and whilst I found some support along the way, there was nothing that could help me with everything in a way that felt natural and authentic. That could help me regain autonomy over my life. And I came to realise that I wasn’t alone. Along the way, I spoke to many women, in different countries and cultures, who felt the same way. Our problems are multifaceted, our stories are multilayered. One area of our life isn’t independent of the others, it’s symbiotic.

A huge contributor to this breakdown and subsequent realisation was endometriosis. It took me 10 years to get to that point and whilst there were support groups out there, I tried but couldn’t relate to them on a personal level.

The Value of a Support Network

After I left the doctors office, I was lucky to be able to call my mother, and to go home to my partner, which leads me to the emotional side of endometriosis.

There is much focus placed on the physical impact, however the emotional and psychological toll that it can have is arguably even harder. The cycle of anticipating and experiencing pain and other symptoms is simply exhausting, and I slowly realised the impact it was having on my relationships, both personally and professionally.

Bleeding every time you have sex with your partner is not fun, and it made the whole experience significantly less enjoyable, and subsequently more infrequent. Over time I’d be lying if I said this didn’t have an impact on both of us and our relationship as a whole, even with a solid foundation after 6 years together. However I feel grateful that I had a partner to support me throughout the whole process. Without him, I may never have plucked up the courage again to go to the doctors and insist on a referral to a specialist. Without that nudge to say enough was enough, I may have continued to normalise the pain and may never have got a diagnosis and treatment. Without the care throughout my journey and surgical recovery, from bringing me ginger tea and pain killers to simply sitting with me when I was in too much pain to talk, I could not have gotten through the last few years. And that’s why I’m so passionate about supporting others now.

Endometriosis can take over your life completely and can have a huge impact on your life and lifestyle. For me, it's about trying to find ways to not let that happen and to not let it completely take over your life. People around you want to help and they want to not see you in pain and so being open with the people that you're comfortable with, to the degree that you're comfortable with, is really important. For me, talking about it and helping other women get help is a way of healing.

Finding your triggers is also key. Through listening to my body, I’ve determined that the biggest trigger for me is stress. I try to use my breathing and finding ways to switch off from what’s causing me dress as a way to manage overall anxiety that contributes towards the pain, but this is often a lot more easier said than done. Food and nutrition is also a huge contributor that I've started educating myself on more recently. As a big foodie, this is arguably one of the hardest parts for me, so it’s about finding a balance, compromising, and doing what works for you without removing all the things that bring you joy. 

The things I wish I knew

It’s also important to highlight the impact education has on those with endometriosis. Unfortunately, despite advances in some areas of health education, there is still a huge disconnect and lack of information around what’s “normal” for women and their bodies, and most importantly, what to do when things aren’t “normal”.

I always tell people to track their symptoms because then you can't be told it's all in your head.

If you track your symptoms, you have data to show "this is when I've had pain, these are my symptoms". If you're not getting help from the medical professional that you're speaking to, try someone else. There's always this feeling of speaking to the expert. There are eight billion people in the world. I don't know how many people are healthcare professionals, but you're not always going to have someone who listens.

I hear people say, “message the practice manager”, and I'm like, no, don't get caught up in bureaucracy because, ultimately, you need to take action and get the help that you need. So what I did recently is move to a new GP and the first GP I saw there was incredible. She referred me straight away to a specialist centre for endometriosis. My advice would be to say: “Here are my symptoms. I think it might be endometriosis. I don't want to see any gynaecologist, I would rather go to a specialist.”

Help them help you. It's not going to solve everything, but it could shorten the wait. The other tip is there's always cancellations so you can call up and be given an appointment. These little hacks can help you get the support you need sooner. In a way, endometriosis has been a trigger for me to look at myself as a whole. It ultimately even inspired my business because understanding how this impacts your life and finding ways to not have it hold you back can be very empowering. I think it's about helping yourself as an individual and then using the healthcare system to support that. 

The one thing I do know is that we deserve better. And whilst there is a long road ahead, the future is filled with hope. I believe that  interest, investment and innovation for endometriosis is possible and that there are people and organisations in this world passionate about making genuine positive change, such as Unfabled. In the meantime, I hope sharing my experience and connecting with other women, encouraging them to share their stories and not feel shame for their condition and experience, gives them power. Our voices are powerful, and the time for being ignored is up. Although talking about women’s health issues, or sharing personal experiences openly, is still considered taboo by many, I believe sharing our journeys helps other women overcome the challenges they are forced to live with.

Remember, you are not alone

I truly believe that if we share our experiences, connect with others who share those experiences, and work together to find real solutions, we will ensure people with endometriosis in generations to come don’t have to live in pain and silence anymore. 

That’s why I’ve been inspired to take my endometriosis support group and monthly Endo Educators community events up a notch and will be hosting an inaugural in-person conference on 11th March in London on The Future of Endometriosis. Until then, if you’re reading this as someone with endometriosis and are looking for a space for real talk, not just about the physical but emotional sides of the condition and ways to practically help manage your condition, please know that you’re not alone and there is hope. I started an endometriosis support group for just this reason, or you can find more information and support at The Endometriosis Foundation.

About the author

Rebekah Lloyd is an international speaker, consultant, podcaster, women's advocate, and founder of This Independent Life, a social impact platform that helps women to achieve personal independence in life through awareness, knowledge and action, regardless of their background. Using the independence triad framework of health, work and money she helps to rebalance, create equity and empower people through support in these 3 core areas of life. Her approach puts facts, stories, and experience at the heart and she embraces the power of content, collaboration and community. Rebekah also founded an endometriosis support group which provides a space for education, navigation of the healthcare system, and real talk, and will be hosting her inaugural, first-of-its-kind, conference on The Future of Endometriosis in London in 2023. She is passionate about women in business and STEM, equality in education, investment and innovation, and the power of business as a force for good.

• Instagram: https://www.instagram.com/thisindependentlife/
• Website: https://thisindependentlife.co/
• Podcast: https://anchor.fm/thisindependentlife
• LinkedIn: https://www.linkedin.com/in/rebekah-lloyd/
• The Future of Endometriosis: https://www.eventbrite.co.uk/e/the-future-of-endometriosis-interest-investment-innovation-tickets-490665342247